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Newbie on BoardHi All, I'm a 43 year old male who has CD since the age of 10.

Hi All,

I'm a 43 year old male who has CD since the age of 10. Over the years, I have had 3 resections in the ileum and small intestine. Always in the same location. First one at the age of 12, then 24 and 30. A few years after the 3rd surgery, I started to develop perianal fistulas which required drainage and setons. I still have my initial seton. Others have come and gone.

I have taken a number of different medications: Prednisone, Imuran, Asacol, Cholestyramine, Remicade and Humira. I took Imuran for a number of years in my teens and stopped at the recommendation of my doctors. It was discovered in my 30s that the Imuran caused nodular regenerative hyperplasia in my liver which has since required me to take Nadolol. I tried Remicade, but that seemed to make things worse and this was discontinued after the initial dose.

For the past 3 years, I have been on Humira. And I can honestly say that this has been a fantastic drug for me. It has given me energy and my entire colon is very clean.

Less than a year ago, I started to develop another fistula near the one with the still installed seton. My surgeon prescribed me Cipro, and Flagyl which I took on and off for over a couple of months. At times it seemed like the meds could stop the new abscess, but unfortunately, it grew and required another seton placement to drain it. This worked briefly. It eventually filled up again, but this time there was a gelatinous substance found inside.

In the past few weeks, I have multiple CT and Pet-CT scans along with a biopsy of the fistula. I learned last Tuesday that the biopsy is cancerous. The initial diagnosis is Mucinous Adenocarcinoma. I have spoken with a few doctors who have all mentioned that this is very rare. The cancer is inside the fistula and not in the rectum or colon. The good news is that this is localized to this one spot. The bad news is that I will probably need treatment, surgery and possible permeant colostomy.

I am meeting with my Oncologist for the first time this upcoming week and I'm also schedule to have an Colonoscopy the day after. I'm optimistic that this will be clean. I won't deny that I am scared about all of this, but I am glad that I have found a forum like this. Odd as it might seem, it's been a joy to read the posts on this site. People are very optimistic and strong.


Thank you to all,


Matt
 

Angrybird

Moderator
Location
Hertfordshire
Hello Matt and welcome to the forum.

I am sorry to hear that you have been given this news, I will definetly be keeping fingers crossed that the upcoming scope is clear. If you would like to learn more about having a colostomy we do have a stoma sub forum that is worth having a look at: http://www.crohnsforum.com/forumdisplay.php?f=46.

Sending lots of best wishes and please keep us updated on how you get on.

AB
xx
 

Jennifer

Adminstrator
Staff member
Location
SLO
Hi and welcome to the forum! :D

Sorry to hear that. I do hope you don't have to have your colon removed and that everything points in your favor. Cancer is not a word you want to hear ever so I hope all goes well for you! :) You've been through enough already. Keep us posted!

Feel free to check out the Humira subforum as well: http://www.crohnsforum.com/forumdisplay.php?f=59
 

David

Co-Founder
Location
Naples, Florida
Hey there Matt and welcome to the community.

Wow, I'm so sorry to hear about the cancer diagnosis. That's terrible and must be so scary :(

I don't have any good advice but wanted to let you know that we're here for you anytime you need us.

*hugs*
 

Jennifer

Adminstrator
Staff member
Location
SLO
Hi mflaum I see you requested additional support. :) I don't know what else to add but I'll bump your thread in hopes someone else might stop by and be of more help. When is your appointment? I hope it goes well. Keep us posted on how you're feeling, what the Oncologist says and how the scope goes. :)
 
Hi All,

A big thank you for the warm welcome to this board. Last week was long and eye awakening. I met with my Oncologist on Tuesday, Colonoscopy Wednesday, MRI Thursday and met a surgeon on Friday. As I suspected, my colon looks good. Some minor disease near the ileum, but not worth operating on. This week, I have another Oncology appt and a meeting with a Radiation Doctor.

I am torn now on which surgeon I should use. The doctor who made my initial diagnosis is a Colon and Rectal surgeon who has worked with cancer. My Oncologist has recommended a different surgeon who is an Oncology Surgeon. His specialty is in the colon and rectal areas. To make things more complicated, my GI doctor who recommended my Oncologist thinks that the Colon Rectal surgeon should do the job. But the Oncologist, who my GI doctor recommended, thinks his surgeon should handle it. I like and trust both of them. Unfortunately as most surgeons are, them working together is not possible.

At least both surgeons have the same recommendation: treatment first and then surgery after. This at least gives me more time to speak with both of them while getting some treatment.

Thanks for reading.


Matt
 

Angrybird

Moderator
Location
Hertfordshire
Thanks for the update Matt, I am glad the scope was what you were expecting altough the docs have certainly not made it complicated though for you surgeon wise have they? It's good you will have some time to learn more about them before making a final decision. Please keep us updated on how you get on.
 
Hi Matt,

I am so glad that it seems you caught this early and have heard the same treatment plan from both doctors! It could be that both of them will be equally effective for your surgery. I have worked in healtcare for 25 years as a physical therapist and I always advise my patients to ask the following questions of their surgeons. You may have already done this but perhaps this may help you to decide who would be best for you.

1. How many surgeries of this type have you performed?
2. What is your success rate at total removal and how do you rate your success rate?
3. Is there any former patients who have had similar procedures performed that would be willing to speak with me?
4. How long have you been doing this type of surgery?

You can also do online searches about their training, read opinions and determine if there have been any actions against them. Depending on state law, this may be posted at your department of labor website where many professionals need to maintain their licesure.

I hope this helps! If you can't make a decision, it is likey that you just have two great options!
 
Hi Matt,

Welcome to the forum. I am very sorry to hear about the biopsy result. It appears that you are handling all of this with amazing strength!!

Are they telling you that the treatment will be only radiation, or chemo plus radiation? The only reason I ask is, if you do in fact need chemo, could you just go the full distance with it and in effect have a stem cell transplant which will knock out both the Crohn's and the cancer. Just a thought. I have a feeling you won't need the chemo tho but just in case, it would be a good question to ask.
 
A big Happy Thanksgiving to everyone on this forum. I hope everyone was able to enjoy lunch-dinner-dessert. I did and hoping to not regret the food and wine I indulged in.

This upcoming Tuesday I begin my first of 4 chemo injections. The doctor has prescribed me a combination of Oxaliplatin and Xeloda. 2 weeks of injections and pills with a week off. 2 cycles. Plus 5 of 7 days of radiation for 5 to 6 weeks.

My radiation doctor seems very optimistic about reducing the size if the tumor. I'm hoping he is correct. I can't wait for the day to ride bikes with my kids.

Happy Thanksgiving everyone.
 
A belated Happy New Year to everyone. I hope everyone made the most of their holidays. Mine were very rough, but if it were not for my children, I would have sulked around the entire time. It's amazing that your own little ones can bring a smile to your face even in hard times.

It's been 11 days now since my last dose of treatment. I went through 25 radiation sessions, 4 infusions and 4 weeks of pills. I have to say that the radiation was (and still somewhat is) the toughest part on treatment. I lost over 15 pounds and have had zero energy. Fortunately, I have put on a couple of lbs and I have more energy today than 11 days ago.

Surgery is scheduled for Feb 21. It's going to be a long 5 weeks with the amount of pain I'm in. Unfortunately, because the tumor is connected to the rectum, the radiation went to town on everything down there. Let's just say its painful each and every time I use the restroom. My surgeon offered to perform the colostomy now and wait to remove the tumor, but I declined. Not sure what is worse: the pain now or 2 surgeries in a month. I figure I would be out double the time.

That's all for now. Thanks for reading.
 

Jennifer

Adminstrator
Staff member
Location
SLO
Thanks for the update mflaum. :) You're doing great!

Two surgeries doesn't sound ideal but I also don't know how bad the pain is. I support you either way! Keep us posted. :D
 
We are thinking of you and praying for you! Hang in there. You are on the journey to recovery. Those kiddos do enable to keep going like we never thought we could!

Take care.
 
Well a lot has changed in the past couple of days. I was originally scheduled for a surgery later this month. Unfortunately, my fistulas keep filling up with stool, which has caused a lot of pain. I must say that the radiation killed something in there. Pee-u.

Anyway I saw my surgeon yesterday and he highly recommended to divert me first and give me my colostomy bag. Then in a month, remove the fistula and tumor.

So today being my 44th Birthday, I have agreed with my surgeon and will be going to the hospital today. Surgery is Thursday. I'm going in early to get a couple other tests. CatScan to look at the mass. I'm also seeing a Liver specialist about my portal hypertension.

Wish me luck


Matt
 

KWalker

Moderator
So sorry to hear about everything being thrown at you like this. I hope you got to atleast enjoy your birthday a little bit. You will start to feel better soon, just hang in there!
 
Thank you everyone for your thoughts and wishes. Last Thursday, I had my surgery. My surgeon was successfully able to divert me and remove my Rectum. Now my stoma and I are getting used to each other. I'm on a soft diet now and digestion is quite painful. I know that things will get better as I eat more foods.

I should be released tomorrow and will be back in about of month. Not looking forward to my next visit, but at least they won't need to go through the abdemum. Lucky me, I will get to eat more of the lovely hospital food.

Thanks all.


Matt
 
Wow, Matt!! I am just tuning in to your story and am amazed. I hope you begin to feel some relief soon.

You are so fortunate to have doctors that you trust so highly. That is a huge battle that many people wage and makes having any illness so much tougher.

You are also heaven blessed to have your children to occupy you and remind you of all the joy that life has to offer.

I wish you all the best and will keep you in my prayers!!
 

David

Co-Founder
Location
Naples, Florida
I'm glad the surgery went well Matt. Be sure to connect with others in the Stoma subforum which Angrybird linked to in the second post of this thread.

I wish you all the best.
 
Thanks so much for sharing with us. I think of you. This is one vital step towards your recovery. Hang in there. There is a brighter time ahead.
 
Tomorrow will be one week since I was released from the hospital. Things are going good for me. I'm eating most foods, but keeping it light as I get used to my stoma. I am having some pains as food passes though, but I figure this is par for the course as it gets used to more and more food.

I saw my surgeon last Monday for the first time since being released. Fortunately, he had nothing but good things to say. During the surgery he took a biopsy of my tumor. I'm happy to report that the cancer is gone and all 17 lymph nodes are clear. My platelet levels are higher now than they have been in 3 years.

I've got about 3 or so weeks until I go back to remove the mass and tumor. Doc needs me to gain weight so I won't need a plastic surgeon.
 

Angrybird

Moderator
Location
Hertfordshire
Thanks for the update hun, I am glad the recent appt had some positive news for you. Have you checked out our stoma forum at all, the folks here should have some advice to give you regarding this.
 
Hey gang,

An update from my last post. I was discharged from the hospital yesterday after my second surgery. This time, my surgeon took out my rectal stump, anus and the fistula which contained the tumor. Wow, what A surgery. I can't say it was tougher than removing the rectum and giving me my stoma, but it is still quite painful. Today is one week since the surgery.

Biopsy of the removed area displayed a "minute" amount of cancer. We believe the Oncologist will order another small round of chemo in 6 or so weeks.

I'm excited to have these two surgeries behind me. I imagine it take a month or so to get back to where I was before this procedure.

Thank you all for reading : )
 

Jennifer

Adminstrator
Staff member
Location
SLO
Thank you for the update. :) Hope you continue to heal up well. Keep us posted on your progress with healing and the chemo as well. *HUGS*
 
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